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Thread: Information that may help some of you

  1. #11

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    I've tried Nuvigil before, agate, and it helped with fatigue quite a bit. If you can, take it early in the morning the first time and see how you do on it. It can keep you awake at night, if I remember correctly.

    Has it been 7 years since you moved? Gosh, how fast time flies. I'm glad to hear that you are walking about. Did you have beautiful flowers again this summer?

    I'm doing well with MS. I've been on Tysabri now for 7.75 years and I credit it with doing so well. I was close to being in a wheelchair permanently when I started Tysabri. My wheelchair is packed in the closet at the moment and I hope it stays there. I do need a cane for getting around and I do fall without it but otherwise I am doing well. I feel fortunate and I am grateful.

    Virginia, I am thinking about you often. I hope you find assistance quickly. I know how hard it is and frightening to be uncertain about MS treatments and the meds you need. It's very stressful. If you have any questions or if I can help you in any way, please message me

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  3. #12
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Virginia View Post
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    Agate, do you know of someplace we could post this that would remain here? This is good information and I would hate to see it lost. If I try to print it out I am afraid I will misplace it. I have so much paper work with insurance, etc. Not saying it should be a sticky, but do we have some other permanent place that you are aware of?
    Good idea! I've put a link to this thread in the sticky called Useful Websites.

    Has it been 7 years since you moved? Gosh, how fast time flies. I'm glad to hear that you are walking about. Did you have beautiful flowers again this summer?

    JTwin, October 14 will mark the 6th year since I moved to another state, after spending 28 years in WA. A rather memorable time because it was raining buckets, to the point where the visibility was very bad, but all of a sudden, as we were crossing the bridge to Portland, the sun came out--and shone gloriously on the river we were crossing. This seemed like a good sign.

    Thanks for the thumbs-up on Provigil. It's hard to believe that any pill would help me to be less fatigued but caffeine that I get in Diet Coke seems to help somewhat, and Provigil just might help more.

    As for the flowers, I had a dozen salmon-colored impatiens plants on my patio this summer but they didn't last nearly as long as the more common colors would. I believe that the very hot summer may have been too much for them. They fizzled out a couple of weeks ago but they were quite enjoyable for many weeks.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #13
    Distinguished Community Member Cherie's Avatar
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    patient Access Network picked up my $2000/ month copays (yes that is two thousand dollars a month) on my REBIF. What a gift. We are no longer drawing off our Home Equity Line of Credit each Month to get the medicine that is keeping the MS at bay. Prior to this, none of the patient assistance networks could cover any of the costs related to my disease modifying therapies unless they were infusions given in a Center. (Tysabri, Lemtrada or Rituxan). I can't take Tysabri because I have such high JCV titers. I am really too old to do Lemtrada (trials are on younger patients ...males do better than females...and it works best for newly diagnosed aggressive disease courses and I have had this for at least 40 years). they have been a GodSend this year,
    Last edited by Cherie; 10-04-2015 at 12:32 PM.

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  7. #14
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    Well, after spending many hours going through Medicare Part D insurance that is offered in my area, I think I have decided on one. It does cover Rebif and if after letting it sit for a couple of days and thinking about it, I still feel this way I will go ahead and change. Then I have to be concerned about weather PAN will help next year, but that I can not determine until December. They will not tell me until then. If they will not I will try a couple of things that JTwin mentioned. There is no way I can afford the co-pay on my own in addition to everything else.

    This thread has been extremely helpful to me and I am very pleased to have such good support in this group. JTwin, we would love to have you check in with us on a more regular basis. Actually, I have been on this forum since January 2001 and was reading before that. I was under another name and when it went down one time I was unable to get back on until I changed my name.

    Thanks again for your thoughtfulness. Also thank you Agate for getting it put in as part of the "useful sites". Now I will not be concerned that I will loose it.
    Virginia

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  9. #15
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    Quote Originally Posted by Cherie View Post
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    patient Access Network picked up my $2000/ month copays (yes that is two thousand dollars a month) on my REBIF. What a gift. We are no longer drawing off our Home Equity Line of Credit each Month to get the medicine that is keeping the MS at bay. Prior to this, none of the patient assistance networks could cover any of the costs related to my disease modifying therapies unless they were infusions given in a Center. (Tysabri, Lemtrada or Rituxan). I can't take Tysabri because I have such high JCV titers. I am really too old to do Lemtrada (trials are on younger patients ...males do better than females...and it works best for newly diagnosed aggressive disease courses and I have had this for at least 40 years). they have been a GodSend this year,
    I must be doing something wrong as they the MS-Medicare only is not accepting new patients. So I called and they suggested that I periodically check the web site as it can change (although normally only after the first of the year-they say).

    Actually I was looking for a BP (Bystolic) med that I had been taking the ins covered it but the copay was $125 a month I contacted the drug company and they did have some help $50 a month but Medicare enrolled do not qualify. I did really well on it but I switched to something else cheaper it doesn't seem to work as well and I have to take other stuff with it at higher dosages that cause fatigue big time.

    I did have "Help with Part D coverage" they cancelled me as with my SSI check (not including my wifes check) I was over the limit. Long story made short I had to pay back the premiums to SS along with the difference in drug costs. In cluding meds administered while in the hospital. Needless to say this is several thousand dollars.

    I have found that in a lot of cases if you own property and I have a what they consider a good SSI award (due to making a good salary while working) I qualify for almost nothing.

    Years ago the State of Idaho Medicade folks suggested that we divorce and if we lived together we could quilify for help to buy insulin for our two kids (at the time it averaged around $800 a month).

    Suggestions?

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  11. #16
    Distinguished Community Member agate's Avatar
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    I understand that people deliberately impoverish themselves just to qualify for Medicaid. I'm not sure how it's done but I think they give away their major assets until they have the minimum allowable resources to qualify for Medicaid. Some states allow you to have a vehicle and own your home. Most allow you to have some savings--and I forget if it's $2000 or $4000 but it's in that range.

    Medicaid covered every cent of Avonex for me for 3 years and ditto with Copaxone. I never saw a bill. I'm not sure it's still doing that but I haven't heard that it isn't.

    The Medicaid people are aware that this is going on and usually have a question on the application like "Have you given away or sold any major asset in the last 2 years?"

    One problem with property ownership, at least in some states (WA, for instance), is that the state puts a lien on your property to reimburse itself for what you've been costing them.

    I had a friend who had that happen. She lived in a house that was all paid for because she and her husband had built it over 30 years before. She was divorced and living there alone, increasingly disabled by emphysema.

    She eventually qualified for Medicaid and home health aides (covered by Medicaid). The state put a lien on her house and I believe that by the time she died, the state may have owned the house completely.

    I'm not sure every state does this.

    I have Medicare/Medicaid and pay nothing for most doctor visits, tests, labwork. There's an occasional copay and there's a fairly hefty copay for diabetic footwear. Most wheelchair repairs are completely covered. I have about $80/month in out-of-pocket medical expenses anyway, and that isn't covered, but copays for rx's are in the $3-$6 range per rx. I pay premiums for dental insurance and for the Medicare Advantage plan I'm on (called "Medicare Part C"--I pay no premiums for A and B because my income is too low).
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #17
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    Agate-have you looked into The SSI program "Help with Medicare Part D"? If you qualify for Medicade you automatically qualify for this program. It might lower your premiums to 0 and your copay's as well. I believe that you can do most of it over the phone. Anything to keep from going to that madhouse they call an office. I live in a rural area and it is still full.

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  15. #18
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Gary View Post
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    Agate-have you looked into The SSI program "Help with Medicare Part D"? If you qualify for Medicade you automatically qualify for this program. It might lower your premiums to 0 and your copay's as well. I believe that you can do most of it over the phone. Anything to keep from going to that madhouse they call an office. I live in a rural area and it is still full.
    I believe I'm getting whatever help there is with Medicare Part D although I don't have SSI. I have "regular" Social Security, which used to be SSDI but now that I'm old enough to be in the retiree category (whee!), I'm getting the retirement type of Social Security.

    My premiums would be 0 if I didn't opt to have dental insurance and the Medicare Advantage plan. I've heard some negative comments about Medicare Advantage but I'm still on it because the whole scene is so involved that I doubt that I could understand anything different.

    I agree that going to any office where assistance is offered is something to avoid.

    In Tacoma I used to have to report at 7 AM at the Department of Health and Human Services office, usually for a scheduled appointment at around 11 but often I waited all day anyway. As the years went by they simplified things and let me get away with appointments over the phone, and here in OR they're willing to do phone appointments too. I had to go in there only the first time.

    I was assigned a regular case worker, and she's been the same person for 6 years. Now they're changing to a system where nobody gets a regular worker. It will be whoever answers the phone. That person will supposedly be a mine of information and able to help.

    But at least they're not requiring me to make a trip in there in person.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #19
    Distinguished Community Member SalpalSally's Avatar
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    I need to look into the Medicaid requirements for Ohio.
    Love, Sally


    "The best way out is always through". Robert Frost







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  19. #20
    Distinguished Community Member Jeanie Z's Avatar
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    :) Hi everyone. I called Medicare yesterday since I received a letter from Care Plus saying "Important Notice: Your Medicare plan won't be offered in 2016." The lady did tell me there is a plan offered called Preferred Cholice of Palm Beach. However I cannot sign up for it until the official sign up period starts on October 15th. I want to make sure I can keep my doctor and will call after the 15th.

    Andy was by to bring in my trash can and recycle bins. He had gone to the bank Jamie has her accounts with and he took their marriage license and a death certificate but they told him he was not even listed as a beneficiary so he has to go to the Probate court.

    My ex and his lady are leaving town tomorrow so Andy is coming right after work today and we will meet them and Jim's family at TGIF in Palm Beach Gardens for dinner.

    Lacy has a new pink collar with a silver heart with a rhinestone on it. Her cloth one shrunk after several baths.

    The weather here is much better than it has been. I only wish it would stay like this awhile. All of this board's posters remain in my prayers. Jeanie :)

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